Canavan Research Illinois (CRI) is a nonprofit corporation and 501(c)(3) public charity based in Illinois. We were established in April 2000 to meet a critical need to support medical research to treat, cure, and improve the quality of lives of all children battling Canavan disease, a rare fatal genetic neurological disorder.

Canvavan Research Illinois is also known as Canavan Disease Reasearch. Canavan Disease Research is the international division of Canavan Research Illinois. CRI is leading the fight to cure Canavan disease through private fundraising efforts, networking affected families and launching the first international patient registry.

Canavan disease is a rare inherited genetic disorder that damages the ability of nerve cells (neurons) in the brain to send and receive messages. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses. More Information

The 22nd Annual Canavan Charity Ball - Link to Events

World Rare Disease Day 2/28/23 - "Flow For A Cause" - contact Ilyce Randell ilyce@canavanresearch.org -847-222-0736 for details

Exciting update from Ilyce Randell regarding the gene therapy trial from Aspa Therapeutics/BridgeBio! - Link to Update

Introducing the website maxieshope.org an extension of Canavan Research Illinois created to increase awareness about Cananvan disease and to provide family services to honor the memory and legacy of Maxie Randell.

Family Networking

We have initiated a new program. With generous support from one of our longtime donors CRI is excited to announce our new Canavan Family Networking Program.

Our central location allows us the unique opportunity to expand our yearly event and network families with each other as well as the leading doctors and researchers working on Canavan disease.

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Secure credit card donations may be made in via PayPal or Network For Good or mail to Canavan Research Illinois, PO Box 5823, Buffalo Grove, IL 60089. Donations are tax deductible.

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Patient Insight Network

This Canavan Disease Patient Insight Network (PIN) is an opportunity to build one central and international network of information on families living with Canavan.

By gathering the experiences of families from around the world, we are creating a research-ready community poised to help drug developers and researchers get closer to treatments and a cure.

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We invite both organizations and families to join the
Canavan Disease Patient Insights Network (PIN)

For Families:

Creating a shared network that collects experiences directly from patients and families is one of the most important things a community can do. Patient data are critical to development and approval of new treatments. We encourage families to join to build on this momentum.

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For Organizations:

Organizations, foundations and networks are invited to join as supporters of the Canavan Disease PIN. As a supporter, your organization’s logo will be added to the PIN homepage to show solidarity with the entire community. Your organization’s contact information will be added to our resource contact list to increase awareness of your site.

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